Cross Party Group on Rare Diseases – June 2015

Yesterday, the Cross Party Group on Rare Diseases held it’s AGM.  The Cross Party Group provides a chance for MSPs to hear from patient organisations and representatives of the Scottish Government about issues affecting people with rare diseases in Scotland.  Bob Doris MSP (SNP) and Malcolm Chisholm MSP (Lab) were re-elected as Co-chairs and Natalie Frankish from the Genetic Alliance was asked to continue as the secretariat.

At this meeting we heard that the Scottish Government has doubled the size of the New Medicines Fund from £40 million to £80 million.  This money is specifically to improve access to treatments for people with rare or end-of-life conditions.

We also heard about the work of the Scottish Medicines Consortium Patient Involvement Network.  Mentors have already been put in place to help patient groups with their submissions.  This is something Haemophlia Scotland may use as we continue to make submissions in support of the new Direct Acting Antiviral treatments for Hepatitis C.

We also discussed the vital importance of Specialist Nurses in Rare Diseases.  We reported on the huge impact specialist nursing has for people with bleeding disorders.  Concerns were raised about how a new fund for specialist nursing would be administered through the regional trusts.

Dan on his way into the meeting.

The final item on the agenda was a report from Dan Farthing-Sykes from Haemophilia Scotland. This was perhaps the most emotionally charged part of the meeting.  Many of the conditions represented on the Group can be compared directly with Haemophilia before the introduction of clotting factor concentrates.  It was all too easy for people to imagine what it would be like to be offered a life changing treatment only to discover later that it had come at a terrible cost. Dan reported the number of infections and deaths and gave some idea of the impact of the disaster.  He outlined how the need to campaign for decades had been an extra burden on the community.

In relation to the Inquiry itself Dan discussed the time and cost of the Inquiry as well as the disappointment many people felt about not being able to give evidence.  He also highlighted just some of the powerful evidence that was confirmed by the Report.  For example that,

• Prisoners and Injecting drug users were not prevented from giving blood early enough.
• People were not told they had been infected – even in the cases of married people with HIV.
• 1 in 4 children treated for a bleeding disorder at Yorkhill were infected with HIV.
• In 1983 Government told some potential blood donors that AIDS was “almost certainly” transmitted by blood and blood products but was still reassuring people with bleeding disorders that there was “no conclusive evidence”.
• When English fractionators produced a Hepatitis C safe product it was not routinely made available to previously untreated people in Scotland – even though the Scottish product was known to be 100% infective for Hepatitis C.
• Surrogate testing was never introduced for blood donors and the introduction of Hepatitis C testing was delayed in Scotland to allow it to be introduced at the same time as the rest of the UK..

He talked about why so many people have described the report as a whitewash.  The lack of a strong condemnation of the disaster, that individuals were not held to account, and that no recommendations about learning lessons for the future were made, have all contributed to the sense of betrayal of those affected.

He finished by highlighting what Haemophilia Scotland, and others, have called for and what had happened so far in response.  In particular,

• The Scottish Government apology, accepting moral responsibility, has been important to many people..
• A Financial Support Review Group is being established to advise the Scottish Government on how financial support should be provided.  It is has been agreed that getting people the financial support they need it the top priority.
• The Scottish Government are committed to conducting to pilot projects to examine the best ways of providing psychosocial support in Scotland with a view to providing a national service.
• That a Short Life Working Group is being established to implement the Penrose Report Recommendation on look-back.
• That a new national Haemophilia committee, The National Managed Clinical Network for Inherited Bleeding Disorders, is being established and will give a stronger patient voice in decisions about service delivery.
• That discussions have begun about a stronger patient voice in decisions about purchasing clotting factor products.
• That the Health (Tobacco, Nicotine etc. and Care) (Scotland) Bill makes provision to introduce a Duty of Candour which, if well implemented, could help improve transparency.
• Shona Robisons has made a statement in relation to access to the new Direct Acting Antivirals for Hepatitis C , saying that “it is very important that those who have been affected through he infected blood and blood products are give and opportunity to have those treatments.”

It has been a long fight to get to this point and there is still a long way to go to fully deal with the impact of the contaminated blood disaster in Scotland.